Trying valcyte again, so far so good

[heapsreal]

I have been on Clomiphene Citrate for a few months now, and had a Dr visit in April, and he said my Testosterone level was good now. I take 25mg 2x/week, a few days apart. I try to take it on the days I go to the gym for a little work out.

GG

PS I think I tried Valcyte about 5 years ago, or perhaps it was Valtrex? I tried it for 2 months with no noticeable improvement, I recall the cost was supposedly $2k/month, and my co-pay was only $20 at the time, those were the good days with low copays!

Yes i have read abit about clomid, although the cost of clomid is pricer then Testosterone, lol?? I asked my doc if increasing t cream on exercise days would help with recovery and he said yes go for it.

Antivirals unfortunately dont work quickly, i think u have to be tested for the right viruses and then give it 6 months atleast and treat other abnormalities that are found, but need a good doc to find these issues too which can be hard.

cheers!!!

 

[heapsreal]

2 weeks post valcyte. things are still good. plonking along at an 8 out of 10, somedays a 9. Do some weight training a couple of days a week.

Current treatments:

Sleep- zopiclone 7.5mg or zolpidem 10mg with antihistamine or trazodone for sleep. Bad times i use seroquel at 25mg. melatonin, occassional tryptophan 2000-3000mg, phosphatidyle serine 500mg.

Hormones- pregnenolone cream 50mg, dhea tabs 25mg twice a day, testosterone 10% cream 1/2ml, arimidex .25mg mon/thurs to lower high E2 from dhea and testosterone and helps increase free testosterone.

Infection/immune system- famvir 250mg twice a day for ebv/cmv, augmentin duo once a day for sinusitis working well, Added extra zinc as doc said it can help with neutropenia, colostrum general immune strengthener.

Nutrition- low to moderate carb diet seem to be able to tolerate more carbs, vit c, vit e 400iu twice a day, b multi, lipoic acid 300mg twice a day, q10 100mg twice a day, nac 600mg twice a day, acetyl carnitine 500mg, creatine 5grams with whey protein drink, sacchromyce bouldarri twice a day for gut health,

Energy booster- used occassionally, acetyl tyrosine, dopa macuna, adrafinil 300mg.

Pain- tramadol 200mg s/r chronic lower back pain and short courses of mobic, neurontin 600mg at night for leg pains etc or 150mg lyrica.

So thats my SHINEP plan for the moment and has been pretty much that for along time with trials of different things here and there.

cheers!!!

 

[heapsreal]

Fingers crossed, almost 3 weeks since i dropped valcyte and so far so good. Still early days i know.

In the past i have describe my workouts as the 2 on 3 off theory, 2 workouts 1 week and then 3 months off?? The last couple of months have been quite consistant. I work irregular hours so dont fit into a normal monday to friday type schedule but basically i exercise 2 days in a row then there is 3-5 days where i cant exercise due to work or just resting up not wanting to exercise any more then 2 days in a row. A few times i have had abit of brain fog a couple of hours after exercising which lasts only a few hours. The next day i feel good with little muscle stiffness. I still have boundaries but they are just alot wider i guess and even if i feel like i dont need it i still have days where i vegetate. Previous attempts to exercise i would feel sick shortly after just warming up and would just call it quits. if i forced myself to exercise i would feel sick and shakey and feel like crap the next few days for sure and sometimes longer. SO definately no exercise high. Now i get that feel good feeling after exercise, how i use to feel. I definately try to exercise so that my heart rate doesnt increase too high and rest alot between sets of exercises. But im finding my strength increasing every day, maybe some muscle memory from over a decade ago. I am considering to start doing some low intensity type cardio exercise, probably just walking. Organised sport like tennis is just too hard to manage around my wierd work schedule but would be could for a social outlet but? I think optimising my low testosterone has played a big part with exercise as well. having the testosterone levels of an 80 y/o doesnt help anyone.

SO i have been using the colostrum but unsure if its having an effect but hoping to see my neutrophils go up in my blood tests in a couple of months. I have just ordered some beta glucan in the hope it too can keep my immune system strong and help keep those dam viruses down, thats the plan anyhow and also be able to stop antibiotics i take for sinusitis soon.

My next plan is to fix my sleep so that im not reliant on sleep meds. Im not sure its possible as its been one of my worst symptoms from the start. If i can maintain my improvements for several months then i think its time to have a crack. I havent really formed any type of plan yet but i suppose tapering off sleep meds will be apart of it. Im only on a low dose of benzo equal to 5-10mg of valium plus generally an antihistamine. I think im going to have to make sure i can get some time off work when i attempt something like this, but will talk it over with my doc about it.

In the past i have had a couple of times when i have improved to almost normal, not spontaneous but once with famvir and another time with inosine, both i havent been able to repeat. Im hoping this time is different as i am treating this from a few different angles now. Its always in the back of your mind that a relapse can occur and hopefully dont lose site of my boundaries. I know the 2 previous relapses after improving significantly really gave my spirit a beating. It was like being teased in a bad way.

I will post again in about 2 months time after my next doctors appointment. I hope my thread gives people encouragement to keep looking for answers. Im not saying to do it my way as i think everyone has to find their own way but hopefully its something different to the gloom stories we read about cfs/me sufferers getting worse or living miserable lives. I think there probably are more people with similar stories to me but many people move on. I say this as i remember reading the old prohealth forum of people improving greatly but then their threads just ended suddenly. Many i believed improved greatly and then got on with their life. So i always thought if/when i got better i would hang around, maybe not as much as when i was crap but keep an eye on things. my post count has already slowed down alot of late which for me is a sign of getting a life outside of cfs/me. I hope i continue to feel good and not have to post of a relapse(fingers crossed) and that others here find answers they need and get better. I think the future is bright as there is alot more research going on then there was 11 years ago when i first became ill, most of the research i remember was from the late 1980s and early 1990s, not alot of new stuff coming out like what is happening now, we need more and i think there is enough interest now that research will keep growing in cfs/me/neuroimmunology.

cheers!!!

 

[SOC]

Great news, heapsreal! I'm looking forward to hearing how you're doing in a couple of months.

Something to hold in the back of your mind.... there's some thinking among the antiviral docs that we may need long-term Valtrex (or Famvir?) to keep herpesviruses suppressed after we shove the active infection back into latency. If your immune system is functioning okay, then it may be a non-issue, but if your titres start climbing again, you might want to look into suppression with antivirals.

Again, congrats! I'm so happy for you!

 

[heapsreal]

Hi soc. Im still taking famvir for now. If I could still get nk function test and it was normal then I would consider stopping av's altogether after a solid 12 months off valcyte.

 

[Ruthie24]

Congrats Heaps! Sure hope you continue to improve and don't have any more relapses. Really have appreciated all your posts and your input on the antivirals, along with all the other things you are doing. The multi-faceted approach you've taken has been helpful to see.

FWIW, I know Dr. Kogelnik told me his patients who have improved on antivirals are in what he calls "immune rehab" for at least a year after finishing their treatment. Guess that means, at least in part, that you're not supposed to "push it" too much, too hard, too fast. Watching Dr. Cheney's videos, he claims that even after you remove the physical cause of the disease, the genes have been changed in such a way to make you sick and that in itself can take up to a year to change back/adjust to the "healthy" version of your physiology.

Thanks for sticking around and sharing your insights with the rest of us!

 

[SOC]

FWIW, I know Dr. Kogelnik told me his patients who have improved on antivirals are in what he calls "immune rehab" for at least a year after finishing their treatment. Guess that means, at least in part, that you're not supposed to "push it" too much, too hard, too fast. Watching Dr. Cheney's videos, he claims that even after you remove the physical cause of the disease, the genes have been changed in such a way to make you sick and that in itself can take up to a year to change back/adjust to the "healthy" version of your physiology.

That's interesting and somewhat consistent with my experience.

 

[Sasha]

Watching Dr. Cheney's videos, he claims that even after you remove the physical cause of the disease, the genes have been changed in such a way to make you sick and that in itself can take up to a year to change back/adjust to the "healthy" version of your physiology.

That's a relief that he thinks it's reversible!

 

[heapsreal]

10 weeks post valcyte and feeling like crap. Still on famvir. Have had issues with sinusitis which really knocks me and puts my blood pressure up when i get completely blocked up, some relief with antibiotics. I dont know if viruses are reactivating but i have brain fog and fatigue back. no exercise for awhile which i was doing and work has been a struggle. Family have all had colds etc and now my 15 y/o boy has been sick in bed for the last 5 days and prior to that was in bed alot earlier then normal the previous fortnight, he did have some side pain, so maybe ebv as it could be from swollen spleen??, getting him checked out today. I have had blood test and see my doc in 2 weeks which hopefully can tell if viruses reactivating??

So i dont know if its sinus infection or just winter bug or cfs coming back????

feel like shit , maybe need valcyte again????

 

[SOC]

Conclusions. Valganciclovir 900 mg showed no superiority efficacy compared to controls (ganciclovir or preemptive) and equivalent efficacy to VGC 450 mg (statistical power: 94% and 97%, respectively) for CMV universal prophylaxis.VGC 900 mg was significantly associated with 3 times increase in the risk of leucopenia and 2 times increase in the risk of rejection compared with VGC 450 mg.
,
http://cid.oxfordjournals.org/content/52/3/313.full
this was the study i was referring to previously, but its a different situation but does show 450mg may be effective for some of us cfsers.

cheers!!!

This only refers to prophylaxis, meaning prevention of CMV, am I right? So this would apply to transplant cases, for example, where they are trying to prevent latent CMV from becoming active, but may not be applicable to treating active cases of CMV. To the best of my knowledge, no ME/CFS patient has been given Valcyte (valganciclovir) prophylactically. Sheesh, many of us can't even get it for active infections. Some docs are using Valtrex (valaciclovir) to prevent reactivations of EBV, CMV, and HHV-6 in ME/CFS patients.

 

[SOC]

10 weeks post valcyte and feeling like crap. Still on famvir. Have had issues with sinusitis which really knocks me and puts my blood pressure up when i get completely blocked up, some relief with antibiotics. I dont know if viruses are reactivating but i have brain fog and fatigue back. no exercise for awhile which i was doing and work has been a struggle. Family have all had colds etc and now my 15 y/o boy has been sick in bed for the last 5 days and prior to that was in bed alot earlier then normal the previous fortnight, he did have some side pain, so maybe ebv as it could be from swollen spleen??, getting him checked out today. I have had blood test and see my doc in 2 weeks which hopefully can tell if viruses reactivating??

So i dont know if its sinus infection or just winter bug or cfs coming back????

feel like shit , maybe need valcyte again????

Maybe the sinus infection could be challenging your immune system giving CMV/EBV a chance to reactivate. One would hope the Famvir would prevent that, though. Maybe it's a cytokine rxn from either the sinus infection or fighting off whatever the family has.

Have you tried azithromycin long-term for the sinus infection? AB's long-term are bad, but recurring sinus infection is probably as bad or worse.

Sorry to hear you're feeling like crap, heaps. I feel for ya, man.

 

[heapsreal]

I have been on abx alot more then i have been off in the last 2 years. doxy worked well for the first 12 months. I have used azithro in the past and it worked for awhile and have some on order. Augmentin works well but can only get 5 days worth and one repeat. currently on minocycline and augmentin. The last couple of days the post nasal drip etc has eased off and just feel crap, i think it feels more viral. Like u mentioned maybe fighting the sinus infection has run me down and cmv/ebv are having a party?? I have 1 more day off then i have 3 10hr days to work, cant see myself doing 1 day at the moment. maybe up my famvir for awhile??

cheers

 

[heapsreal]

This only refers to prophylaxis, meaning prevention of CMV, am I right? So this would apply to transplant cases, for example, where they are trying to prevent latent CMV from becoming active, but may not be applicable to treating active cases of CMV. To the best of my knowledge, no ME/CFS patient has been given Valcyte (valganciclovir) prophylactically. Sheesh, many of us can't even get it for active infections. Some docs are using Valtrex (valaciclovir) to prevent reactivations of EBV, CMV, and HHV-6 in ME/CFS patients.

Whats the longest time period on valcyte u have heard someone being on it?
The concern is that the longer one is on it the more chance of side effects?

 

[SOC]

Whats the longest time period on valcyte u have heard someone being on it?
The concern is that the longer one is on it the more chance of side effects?

I think my uncle was on it for 5-6 years, but he may have been confusing Valcyte and Valtrex. It's easy to do. He was also in his 60's - 70's at the time, so there was less concern about long-term effects.

Other than that, the longest I've heard is a couple of years, but I don't know a lot of people on Valcyte, so that doesn't mean much.

As I understand it, higher dose and longer time increase the chance of side effects. However, side effects are reversible if you catch them quickly which is why it is advised to have blood tests every 4-6 weeks to check for neutropenia and liver problems.

I'm still concerned that your low Valcyte dose could be setting you up for developing a Valcyte-resistant strain of CMV which would be very bad. Best to knock the sucker back as quickly as possible, then use something less toxic, like Valtrex, to keep the virus latent, IMO.

 

[heapsreal]

I think my uncle was on it for 5-6 years, but he may have been confusing Valcyte and Valtrex. It's easy to do. He was also in his 60's - 70's at the time, so there was less concern about long-term effects.

Other than that, the longest I've heard is a couple of years, but I don't know a lot of people on Valcyte, so that doesn't mean much.

As I understand it, higher dose and longer time increase the chance of side effects. However, side effects are reversible if you catch them quickly which is why it is advised to have blood tests every 4-6 weeks to check for neutropenia and liver problems.

I'm still concerned that your low Valcyte dose could be setting you up for developing a Valcyte-resistant strain of CMV which would be very bad. Best to knock the sucker back as quickly as possible, then use something less toxic, like Valtrex, to keep the virus latent, IMO.

I started on 1 valcyte and moved to 2 valcyte after several months and then when my cd8 numbers came down i then went down to 1 valcyte for the remainding several months.
resistants is possible but i recall reading that montoya had a few patients relapse when off valcyte and they respond when they were put back on??

 

[heapsreal]

Good to have these threads to look back on.

The first 4 months were on 1 tab a day. Then moved to 2 tabs a day for 5 months, then a further 3-4 months on 1 valcyte. When i first moved to 2 tabs a day i had a few days where i backed off to 1 tab but only did this a few times. Prior to all this i had a couple attempts at valcyte but none lasting longer then 2 weeks due to feeling incredibly worse. I think these couple of shorter trials may have helped me to manage the longer trial i have just finished. I dont know if i could have developed a resistant strain from it?? Wouldnt i have gotten worse while i was on valcyte?

Depending on my next lot of tests, if my lymphocytes are high and my neutrophils arent low i will consider the valcyte again but think i need to get the sinus stuff sorted somehow, which i think is due to neutropenia from valcyte??

 

[Sasha]

feel like shit , maybe need valcyte again????

Sorry you're feeling bad, heaps.

 

[maryb]

Sorry you're feeling bad, heaps.

Me too - hope you figure it out.

 

[john66]

Hope you get it figured out Heaps. It seems that your cognition and awareness of what is going on in your body is a great help. I wish I could say the same!

 

[heapsreal]

Hope you get it figured out Heaps. It seems that your cognition and awareness of what is going on in your body is a great help. I wish I could say the same!

LOL i got no idea, im just guessing. 2 weeks i will get some results back.
i think i found a cure though, panadeine forte, head doesnt hurt just all soft and fluffy